a rabble-rouser

my sour grapes

This quote sums up what I observe as I see the whole Patient Engagement thing drift further and further away from the people at the grassroots. Patient Engagement (and before that Patient Centred Care) used to be a movement of the people. It is no longer a movement and is now wholly owned by organizations that use patient and family representatives who act, look and talk like them to pretend they are listening to all the people. Patient engagement has become over-professionalized, less-diverse and now represents only an handful of elite chosen voices. Patient engagement does not look like the people who are sitting in the waiting rooms in clinics and hospitals.

If you are one of those voices and you are not actively creating space for people who are different from you, then you are part of the problem.

I know this because I used to be one of the chosen people. I was a family representative in pediatric health care in Canada. I chaired national committees, spoke at conferences and overall felt like a pretty important person. Then I got cancer. This was my reckoning.

In my recovery after cancer treatment and my struggles to get back up from my knees, I realized that nobody in oncology was interested in any of my wisdom about how to make things better for patients. I was just another middle-aged breast cancer patient (and breast cancer patients are a dime a dozen in the cancer world). This was extremely humbling. This humbling leads me to Seth Godin’s quote.

If you are one of the chosen ones to represent patients and families, please realize that the only person you can represent is yourself. If you are a family member, you cannot and should not represent your loved one. You can of course speak and you should speak, but you own your own story and nobody else’s.

Always, always consider: how can I bring other voices along with me? How can I use my power to create opportunities to share at the podium or around the boardroom table? How do I inform myself by actively seeking out and listening to people who are different than me?

Lately I’ve turned down speaking engagements and committee appointments because I don’t think we need another white, educated, economically-privileged voice like mine amplified to health care audiences (who are mostly just like me. It is the ultimate in confirmation bias). It is similar to the Manel concept – unless we start saying ‘no’ and making room for other voices, we will be the only ones taking up space.

Here are some things you can do: ask to co-present with someone else or suggest a panel format that offers different people’s opinions. Say ‘no’ if you are the only patient or family representative, or you are getting asked to work for free. (If this happens because you can afford it, there is NEVER EVER going to be diversity). Use your chosen voice and power to demand change. The time has come to share power with those who don’t act, look or talk just like you and me.

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One thought on “my sour grapes”

Sue, I really appreciate this post. I have opportunity to speak and present about raising children with disability – and I am now serving as a Board member with a provincial children’s rehab organization. Yet I struggle with the fact that I too am a white privileged woman… and I cannot represent all families nor should I. I look forward to the day when more voices are heard. Thanks so much for your words. Sara